Another update

Hi,

I hope you are all feeling well, I got out of hospital on Wednesday they took my upper right lobe out all seemed to have gone well albeit I got a chest infection and on antibiotics, I feel more sore than the first time but put that down to this being open surgery, now I have to look forward to the Chemotherapy, I am having Cisplatin and Vinorelbine can anyone whose had this combination tell me how they felt I am very scared of having this treatment at the moment.

take care

Margaret x

16 Replies

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  • Hi margaret glad to hear youre home after surgery, i too had an infection while in hospital but soon cleared up with meds, it will take longer to recover after the open surgery but im sure you will get through it. I didnt have any follow up treatment but many people on here will be able to share there experience with you. Take things easy and be kind to yourself, speak soon. Julie x

  • Thanks Julie, when I asked why I would need to have chemo I was told it give me a better chance of cancer not returning 10% I think , after reading all the side effects although I know not everyone gets them I am having second thought's as if its worth it, don't know what to do.

    Margaret x

  • Really feel for you having to make that decision, it cant be easy for anyone having to face it, hope you get some feedback from others who have had the same drugs on here very soon, take care.

    Julie x

  • Thanks Julie, hopefully I will get some feed back from others who have had same drugs. hope you are keeping well

    take care

    Margaret x

  • I had my right lung removed (open surgery, not VATS) on 10th June 2014 and started this chemo combination on 25th July 2014. I was able to complete all 4 cycles on time, with my last day of treatment 3rd October.

    First of all, I would say that now I feel almost back to normal other than neuropathy in my feet (numbness) which started some weeks after I finished treatment and is currently being treated - it might clear up and might not but doesn't stop me doing anything. My job involves extensive travel in the UK and I'm back doing that with no problem. I've also resumed playing golf recently. A month or two ago I wasn't sure if I would ever do the golf again.

    On to the chemo, I was lucky not to suffer any major side effects during treatment other than the usual

    - loss of appetite, eat exactly what you want when you want it and when you can

    -loss of weight (now I've almost put it all back on)

    - change in taste, I went off some favourite foods and drink but onto others that I didn't like before, this has now returned to normal

    -constipation (you need to get ahead of it, I used movacol sachets and started taking them on day of treatment when I didn't really need them but had learned from experience that if I didn't I had major problems a few days later)

    - mouth ulcers which came regular as clockwork, remedies from chemist no good and a waste of money, I had to get prescription stuff from GP

    - hair thinned but didn't drop out entirely

    - fatigue which is hard to describe and lasts a good while after but does go away, I promise

    - luckily I didn't get any infections (which are dangerous) but recommend you get a thermometer and check your temperature daily to head off any problem if it arises

    I think you need to remember that they will check you regularly to make sure you remain fit for the treatment and at any time they may change dose or drugs if they need to. Also, you always have the option to stop if it gets too bad for you. You'll also be given anti sickness drugs, take them whether or not you feel sick, and you should have 24 hour access to someone at hospital to 'phone if you have any problems or questions. I got great support all round.

    It's not easy but it's do-able and I didn't hesitate to have it in the first place because I thought any chance to reduce the risk of the cancer coming back was worth it. In hindsight I'm glad I did have it, and I would still have it knowing what's involved.

    I hope you have an easy journey through your treatment and wish you all the best. Anything else you want to know just ask.

  • Thank you so much for taking the time to write in such great detail what to expect, its much better than reading all these leaflets they give you, it helps more to read personal experiences and the little tips on coping, I know everyone reacts different to treatments, but how you have described your journey is much how I imagined it to be, I am still out on this one ,I have an appointment on 9th March so sometime to think.

    Thank you again , I wish you well on your next journey and good health for the future.

    Margaret x

  • Hi Margaret, the above post from Excavator says it all.... I too had a lobectomy in September and was offered the same combination of chemo as you. It was for adjuvant purposes...offering a five per cent greater chance of cancer not coming back. Without chemo they told me it was a 50/50 chance of coming back -so having the chemo would change the odds to 55/45. I researched the side effects and scared myself so badly that I turned it down...mainly to do with me being very underweight to begin with and not very strong. My family were unhappy with my decision but I stood my ground and am now taking lots of alternative remedies which I pray will give me benefits equalling at least five per cent, if not more. I understand how scared you feel...they are brutal drugs, but most people do fine on them so don't let my fear influence you in any way. I just wanted to let you know that I really do understand the dilemma you are living with. I wish you much strength. Stevey

  • Hi Stevey,

    Makes you wonder were they really get these percentages from, they offered me a 10% of cancer not coming back if I had the chemo but even that doesn't seem much when you think what you have to go through for it, I am thinking like you after reading the side effects, but unfortunately Ive been dealt a double wammy as I also have a small tumor in my left lung which I am told will be dealt with later , after ive got over this, it was mentioned this maybe watched or treated with radiotherapy, I not quite clear on this I will have to ask more questions next visit, how are you doing on alternative remedies, what do you take? sending positive thoughts that they will help you, keep us informed.

    Margaret x

  • Hi again Margaret, I have two "growths" in each of my upper lungs which were not dealt with by surgery as they couldn't be certain what they were. However they were certain that I had a cancerous tumour in my lower right lung so that was removed in September. That was when they found and removed a lymph node that was infected as well. Then they offered me chemo to chase away any rogue cells that had dislodged during surgery. To my mind it was like taking a sledge hammer to crack a nut! I thought about it right up until a few days before my treatment was meant to start.....then cancelled it. My fear of what it would do to my otherwise healthy body was just too great for me. My friends and family thought I was nuts...but I felt that if I had chemo my life would be outside of my own control. So I took control back and now I am back to myself again....the past few months I just felt like I was in a black hole but now I'm smiling again and even found myself singing the other day! I have put my faith in the illegal oil protocol for the last few weeks and am feeling and looking great again...just hope it does what the anecdotal evidence suggests! I don't know if the cancer will come back in the future, it may have already for all I know, but I reckon taking the oil must improve my chances by at least the five per cent the chemo offered.....they said the chemo wouldn't treat the unspecified growths they didn't remove, so maybe the oil will. It's my "green" form of chemo!!! Since I told my consultant I didn't want chemo they have told me that in the future they will only give me chest X-rays- no ct scans. When I asked why they said a ct scan would be too much radiation!!! What a joke....but I wasn't laughing. So since an X-ray of my chest is unlikely to reveal mets to my brain or liver, I feel like I have been thrown to the wolves because I wouldn't conform with the chemo. So I guess I will never know if the oil has worked unless I can pay for a ct scan or better still, a pet scan. then again - do I really want to know?!!!! The hospital told me to come back "when I get symptoms"......thanks for that Bournemouth Hospital! Hope you feel able to make the best decision for you and your body...not for the people around you. Best wishes. Stevey

  • Hi Stevey,

    I really do wish you well as I can understand were you are coming from, no ct scans that's not right you must feel as you have been abandoned, I would have thought it was a choice if you had chemo or not as everyone isn't the same, if you decide against it you should be treated just the same. I have heard a lot about the oil and I hope it works, you say you wont know but if you feel okay like you do now it must be doing something, after all we don't know if or for how long chemo works for I will send positive thoughts your way ,let us know how you are, thanks for the wise words at the end will keep them in mind.

    best wishes

    Margaret x

  • Hi Stevey Am very interested in the "illegal Oil therapy" you mentioned. Would you let me know how/where to obtain info? Many thanks Emcee

  • Hi Emcee, could you let me have your email address so that I can give you the information privately. Stevey

  • margbrid@hotmil.com

  • sorry - meant margbrid@hotmail.com

  • Steven, I wouldn't worry about not getting CT scans and not even sure about the X-ray. My first time round the initial X-ray showed a NSILD, it wasn't till I had CT scan that the tumour showd up at the back of the lung.

    This time around the Ct scan didn't show up anything on the liver until I got the PET scan.

    You know your own body better than anyone and if you think things are perhaps not right then shout loudest to get tests.

    Good Luck

    Rab

  • Hi Margaret, I had A RLL in 2011 and had the same adjuvant chemo. I had to change the Cisplatin to the sister drug Carboplatin as I developed Tinnitus.

    Like Excavator I had similar side effects ,no neuropathy, and I found Ducalox worked for me with the constipation. I was back working at my part time job and playing golf within 6 months after surgery.

    The decision to go for adjuvant chemo is an entirely personal one, all I can say is that you can always stop the chemo if side effects become debilitating. Good luck with whatever decision you make.

    Best Wishes Rab

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